Is he Autistic enough?

First, allow me to say hello! I know I have been gone for a while, but any of you who have busy lives will understand that some times we have to take a break and focus on the world we live in.

As you can tell by the title of this post, this is going to be a sort of therapeutic vent session for me, as I am pretty angry with some of the treatment we have received. Aiden and I have been pretty involved in the Autistic community since his diagnosis in May 2013, until this year. I was set to get involved in instruction and taking a more active role in community involvement when that seemed to just fall off the face of my proverbial map. The individual who was set to get me involved with all that ceased communication with me on the topic entirely.

I went out to lunch, after a fundraising event, with one of the co-founders of the class I was set to start teaching. During the course of this lunch this individual, who I thought was a friend, asked me if I had gotten a second opinion on Aiden's diagnosis, because it did not seem that he was truly Autistic.

As you can imagine I was floored by the comment, especially from someone who has a child with low functioning Autism. I have ceased involvement in the organization completely and recently allowed my membership to lapse.

There seems to be a type of discrimination within the Autistic community. My son seems to not be "Autistic enough" to be involved in the Autism community. As you all know my son has high functioning Autism. We've had him involved with ABA and OT over these last two years and I'd swear by them both. The coping skills they have taught him have been priceless and I continue to watch his behavior and mannerisms improve greatly. The earlier the intervention occurs the better off they are in the long run. Aiden still stims. He still has sensory processing struggles. He still has Autistic tendencies. Aiden still has and will always have Autism Spectrum Disorder.

I am grateful in a selfish way, and I'm not afraid to admit it. I'm grateful everyday his Autism is high functioning. In a way I hoped other people would be happy for us, knowing their struggles. I'd like to make an emotional comparison, not a literal one at this point. To me it would be like being angry someone else is cancer free when you yourself have cancer. I feel for those with low-moderate functioning loved ones. I don't pitty them, I feel their pain. Their daily struggles I can only imagine and I see the frustration. I see the monetary costs. I know it's overwhelming, but I do not presume to know it all about their daily lives. People see my son and say "Well I don't see how he could be Autistic. He doesn't act like it at all" and I just want to scream: "Do you know how much work that takes?!" Do you know how on the ball I have to be as a mom to scratch that surface? Do you know how many fights my husband and I have had over money and therapy needs? Could you even begin to understand how perceptive I have to be to him at all times to maintain that sweet little boy you see before you? How much I have to assess his surroundings to keep you comfortable?

I suppose I am further angered because my son will be the one to advocate for others, from a literal first hand perspective. He is the future of the Autism community and just because he is verbal, capable, and able to express himself, does not mean he does not have his own struggles with this disorder. How could I expect anyone to understand that? You cannot see the characteristics right away when you see him, so how could he possibly have Autism? You cannot see my psoriatic arthritis, so how could I suffer from the disease?

It is positively maddening when a community of people who scream and fight for education and acceptance, ostracize one of their own. It is absolutely counter productive for a person to assume they have "seen" Autism, when this community preaches that no two Autistic individuals are the same. This community demands the public to accept Autism and then refuse to accept my son, who is High Functioning, but not "challenged" enough to be classified as "Autistic enough" for them. At least that is the message I am receiving based on their actions and words.

The emotional toll of a diagnosis is high. Anyone who has ever sat through a diagnostic meeting will understand what I mean. When someone questions that journey all those feelings come back. You remember everything about it and how you felt. It makes you angry and it hurts, especially coming from people you should feel "safe" talking to about this situation. People who come from an area of like experiences.

I suppose I just expected more. I'm just grateful he is still to young to have formed attachments to people in that organization. I wish them the best on their unique Autism journeys, but my family will no longer join them on their path. It's sad, but necessary for our overall well being.

I hope that this helps someone else out there not feel so alone. High Functioning Autism is still Autism. All we want is acceptance, just like anyone else.

Thank you all for understanding. Please feel free to follow us on Facebook: https://www.facebook.com/AidensHereos

Alan Turning

If any of you have been following the movies lately, you have no doubt heard of or seen the Imitation Game. This movie, based on the true story of Alan Turning, is a beautiful story about a misfit genius, turned war hero, who cracked the enigma machine during World War II. This movie has also done something else, it has created a renewed dialogue about Autism.

 While watching the movie my husband turned to me in the first 5 minutes and asked "Is he Autistic?" Of course I didn't know, but he read my mind. Actor Benedict Cumberbatch and co stars have said that he did not purposefully portray Autism characteristics while acting as Alan Turning. "That conversation never came up on set" Keira Knightley said during one interview. Purposeful or not he hit the mannerisms right on the head, the poor social interaction, intense interests, the literal acceptance of every thing, and little to no friends all indicate high functioning Autism.

I was curious so I looked up whether Alan Turning was diagnosed with Autism, he had not been before his death in 1954. Retrospectively experts think Turning may have been Autistic, but they cannot be sure.  There are conflicting reports about his personality and mannerisms from family and small group of friends. There is no doubt Turning was an absolute genius that touched multiple areas of science. Turning is credited with creating the first computer, the Turning Machine, along with many more accomplishments. There is one other explanation for Turning's aloofness. Turning was a homosexual. During the time of his life homosexuality was illegal in the UK and punishable by up to life in prison. It could be that Turning was "odd" because he was trying to hide that part of himself from the public, he did get married in an effort to further hide this secret.

One thing is for sure: I want to thank Benedict for his beautiful acting job in the Imitation Game. We, as an Autism community, should be grateful for any dialogue that is opened, accidental or purposeful, regarding our loved ones diagnosis. It gives us a perfect example to point to about the mannerisms and habits commonly seen in HF individuals. Movies are here to entertain, so not every fact they give is 100% correct, but it can be used as a visual example. We now have the responsibility to work off this foundation and correct misconceptions by the public from the Hollywood spin.

Do I think Alan Turning was Autistic? I think there is a good possibility that Alan Turning was, but without knowing him personally I don't think anyone can say either way. Regardless, Alan Turning is a great role model for our kids and the perfect example for acceptance of all different kinds of people.

If you would like to read more about Alan Turning, please feel free to read his biography or view this article on Wikipedia. 

Parental Fitness and Autism

I wanted to take the time today to talk to everyone about parental fitness. This is not, on its face, related to Autism, but it does impact the quality of life you experience and your loved one experiences. I know to sometimes the world of exercise seems like a secret society. I want to help you navigate it with this introduction. We all have heard the multiple benefits of exercise, so instead of harping on it I wanted to share how I have been maintaining an exercise routine in my hectic house.

Aiden was born in 2011 and my daughter was born in 2012, after she was born I weighed 180lbs. On my 5'6" frame I was able to hide it, but that didn't mean I was happy. I had been struggling with my routine already, since sustaining a knee injury in a serious car accident in 2009, which required two separate operations in 2010 and 2011. Aiden was diagnosed with Autism in 2013. At that point I had two children 2 and younger and one had a life changing diagnosis. Also in 2013 I was diagnosed with arthritis, which further contributed to my fatigue and stress. My story is not special. My story can be shared by many people throughout the country, maybe even by one of my readers. So why share it? Because I want you to know I understand where you are coming from. Raising children is a struggle on its own, add in health stressors, work, and general family life, its a wonder that anyone can maintain their sanity. So how do I do it?

First thing I'll say is I started buckling down again on my fitness routine in mid-2014. Aiden was a very mature 3 year old and Haley was almost 2, so they could and did entertain themselves for a decent period of time. It is hard to maintain a routine with a baby around or a young toddler. I tell new moms to just go for a walk. put the baby in their stroller or strap them into their baby carrier and take them for a walk. Its a great bonding tool for you and your little one, it helps expand their vocabulary if you talk to them during the walk, and you are beginning to lay the foundation for your future workout regimen. Don't think after having a baby you are just going to jump right back into your workout routine. Don't over exhaust yourself, take the time to just be a new mommy. It is an all consuming adventure. When you have recovered and have regained a "normal" sleep schedule again, then start really hitting the workouts again. If you have a gym membership take the little ones to the kid care area and go work out. It gives you a break,which is fantastic, and you get your workout in.

When you decide it's time to either being a workout routine for the first time in your life or to start back up you have to understand that this is for you and no one else. You cannot make a life changing decision for anyone else but yourself. This is your selfish time, it is your selfish act. You also have to realize the investment. You will be dedicating a portion of your week, probably around an hour in length at least 5-6 days a week. You will be investing money into fitness. You don't have to invest a whole lot, but you will be paying for equipment and items to help you with injury recovery. Injuries can and do happen with exercise.

So lets talk about how to set yourself up for a fitness routine. First and foremost you need a good pair of shoes. Yes, shoes make all the difference in the world in the health of your joints and feet. I am by no means saying you need to go buy $100-$150 or more for a pair of shoes, which you very easily could. If you do, then that's fine, I cannot afford that. I look for a good pair of Nike's, Newbalance, or my personal favorite Asics. I specifically search for running shoes, but you can also select a pair of cross trainers. Yes, there are specific shoes for specific activities. If you are interested in a cardio routine then running shoes will do well for you, but if you want to lift weights, play sports, or engage in a very dynamic routine then go with cross trainers. Cross trainers are designed to offer support to your ankles during side to side movements, or quick turns, but are lighter than regular tennis shoes and offer more cushioning for running. Running shoes are lighter than regular tennis shoes and cross trainers. They are designed for forward motion only. If you have never ritually exercised before I strongly recommend getting a pair of cross trainers. I say that because it will help you prevent more injuries while you are learning how to exercise.

Buy yourself a few different types of workout DVDs, like Pilates, yoga, cardio based videos, etc. You really only need two or three to start off with, that will help you diversify your workouts. Also pick up light hand weights. Start with 2lbs, 5lbs, and 8lbs. Then you can move up as your weight lifting routine gets easier. Also pick up some light ankle weights or ankle weights that allow you to add weight to them as you get stronger. You will also need a yoga mat. A yoga mat is something I always underestimated until I bought one. Now, its almost a requirement. The mats help so much to cushion your back and hands while doing push ups, sit ups, and other floor workouts.

So you got your equipment, you have some athletic attire, what else do you need? You need a well stocked medicine cabinet. Start with ice packs. I love, love my Mueller ice pack. It never fails and it has a velcro strap that helps hold it in place wherever I put it. Get yourself 2 ice packs minimum and just keep them in your freezer. Ice is your first injury treatment. If you turn an ankle or fall and hit your knee wrist, etc, the first thing you put on is ice. Ice for 48 hours then heat for 24. That being said the next thing you need is a heating pad. You only need one. Ibuprofen is probably something you already have, it helps with inflammation and soreness. You also need to make your your first aide kit is up to speed, band-aids, ointment, ace bandage wraps, etc. Some optional items are icy hot and the smart relief TENS machine. These items are inexpensive and you can use them to help your sore muscles and treat injuries.

One of the biggest struggles you will find is with diet. You will be hungry, but that feeling goes away. If you have conditioned your body to eat 3,000 calories a day, when a typical woman only needs 1,500 calories a day, you will experience hunger. Drink water during that hunger. Keep your calories down and try your hardest not to break the threshold. You will do that on occasion, don't be to hard on yourself over it. Wait an hour and do a workout. You will have intense cravings, they will subside. Allow a cheat day one day a week during which you eat whatever you want, then the next day you buckle back down. Over time, cut cheat day down to a cheat meal. You will find that I had to cut almost all carbohydrates from my diet before I saw a dent in my weight. I had to only allow myself to eat wrap sandwiches 2-3 times a week. Everything else was carb free. You may find that will not work for you. Maybe sugar is your nemesis. Chocolate is mine.

I allow myself to buy one bag of snack size chocolates and I started out eating two a day, then cut it to one, now I only eat it when I crave it. Your diet control starts with the grocery store. Shop along the outside perimeter of the store.  That is where the fresh foods are kept. A big part of maintaining a healthy lifestyle is learning to cook with fresh foods. In the frozen foods section try the different health foods Smart Ones, Weight Watchers, and Healthy Choice are some of the options I have tried. The foods are getting better and better in quality and taste, though they should not make up the majority of your diet since they have high sodium content. These meals are fantastic in a pinch or an unexpected late night. The key to diet is variety. Try different fruits and vegetables, you may surprise yourself and expand your tastes. Its easier now more than ever to get healthy recipes online and through social media. The last thing I will recommend in this section is water. I recently picked up a water bottle that holds 2.2 L, which is equal to 8 glasses of water. I drink one of those full water bottle a day, minimum, but usually I drink more. I only allow myself one caffeinated beverage a day, but that is because I cannot drink coffee. I drink energy drinks (bad I know), but I am human and I have my vices.

Now you have your clothes, an up to date medicine cabinet, and a healthy refrigerator, lets start the exercise routine. Find what works for you. For some of you its Zumba, P90X, or good old fashion running and lifting. The point is to do what you can do and everyday you do something, unless you are injured. Find an eclectic mix of things, that way when you start to get lazy or tired, you can switch to a different type of exercise. A good amount of exercise videos can be found online or can be ordered in the mail. You can also sign up for a gym membership. If you have no previous workout experience I do recommend this. This will give you access to trainers, other people at different levels of fitness, fitness classes, and other resources. Don't be afraid to ask these people questions. If you have a pain or ache stop someone who is obviously on a break and ask them about it. Ask the trainers about it, they will tell you their opinion and it will teach you a great deal. If you have a question about the machines or a particular movement ask someone. Hiring a personal trainer is great, if you can afford it. A lot of people who work out understand where you are because they had to start somewhere too and most of them would love to answer a question or two. Try not to get in their way or take up to much of their time, since they are also there for a workout.

When we cut back on our expenses the gym was the first thing to go. Between my workout apps and videos, along with my prior knowledge I work out effectively at home. I simply give my kids their lunch and turn on a movie they love. I then go into our office, leave the door open and begin my routine. I eat after my workout has concluded. If my husband is home then workouts suddenly become so much easier, since I can go on my runs and leave the kids with him. My workouts are usually 45 minutes to an hour long and I have recently started working out twice a day when I am off work. As far as when I workout I prefer mid morning and late afternoon workouts, but that depends on you completely. You have to find a time that works well for you. It could be a 30 minute chunk of your lunch break on work days, maybe you prefer to wake up earlier or you can work out when you get home. Finding a time that works for you is just as important, if not more so than finding a routine that works for you and you have to stick with it.

Something that has recently helped me jump start my workouts again is my fitness tracker. I purchased a Jawbone Up, but there are so many others out there you can have your choice. This little piece of equipment keeps track of my sleep patterns, steps, workouts, my diet, etc. A tool like this has taught me how my calorie intake is directly impacted by my exercise routine. It also has helped me make better food choices. You don't have to have one to start, and if you follow the process you set for yourself you will probably find that the weight falls off at first, which is exactly what you want. This item helps when you hit a plateau or find yourself going backwards.

Plateauing in your workouts is not uncommon at all and it simply means you need to switch up your routine in exercise or diet. If you notice your weight increasing, critique what you have been eating first. If there has been no change in your diet, then you are probably gaining muscle, which is good because muscles eat fat. The more muscle mass you have the more fat you burn.

Over the last few months I have lost 22 lbs and gone down 2 jeans sizes. It's a liberating feeling and if you are considering starting an exercise routine I hope you found this helpful. I think as you stick with your routine you will find working out gets easier and easier and your body actually craves the exercise. You can do it on any budget and with kids at home too! 

Relationships...

I wanted to take a moment today to have a conversation with you. It's not really Autism related, but I wanted to point something out in the world of parenting and relationships. Yes, despite your loved one having Autism, some of you are parents or behaving as caregivers.

Have you ever noticed, when you devote your life to someone else, you lose your identity? Think about it. When someone asks you to describe yourself, what do you tell them? What is the first thing you say? I always say "Well I'm a mom". Stop. Did I answer the question? No, not really. Describe yourself, WHO are you, not what are you. I am a smart, disciplined, outgoing, funny and strong woman, but is it selfish for me to acknowledge those parts of myself, since I am not putting my kids first?

Society puts such pressure on parents and caregivers. Somehow you love your little ones less when you think of yourself and that is just not true. Couldn't be further from the truth, actually. Think about the first time you met other parents in your kid's class. How did you introduce yourself. "Hi, I'm Aiden's mom." As if you have no other identity on this Earth and your sole purpose is to function as your child's caregiver, twenty four hours a day, seven days a week. That is your primary purpose, but it is not your sole purpose. We cave to pressure. What you really have just said is "Hi, I love my kid so much and I don't want you to think I don't, so I'm going to put them first and then smile really hard through my coffee coma, because I am literally so exhausted, but I don't want you to know it because we are all Betty Crocker and Suzie Homemaker and We Can Do It poster material". What in the world is that? Why do I care? Because somehow we have come to value other's opinions first, then our families, then our friends, then our own. Why? How does your perception change when I say "Hi, my name is Sarah and Aiden is my son"?

I have just created my own identity and established that I am my own individual, separate and apart from my child, while maintaining that my son is important to me. Does it come off strong, it might. I have always had a strong personality, so I've had to accept that some people are uncomfortable with that. I have also told you that I am human, separate and apart from my child, and I'd like you to acknowledge that part of me. Ask other parent's for their own names and ask what they do for a living. Help them to think about themselves, you will find that people value being thought of as individuals.

Think about your friends. Do you have "selfish time" friends? Aka, friend that are not at all connected to your child other than through you. The people you spend the most time with are probably those you have met through your child and your friends are the parents of your child's friends. They are good people to have around, but I think you will find that some of them eb and flow. They leave and may come back, depending on the children's relationships. That's ok. It is a natural part of relationships. You are gaining from the relationship, as are they, until one of you is no longer gaining and then the friendship will fade. It's nothing to be sad about, but it is something to expect. Selfish time friends are important, because they care about YOU. They like to go out and have fun with you. So go out to lunch or dinner and have fun. You'll find that they can get your mind onto topics other than your child. Most parents brains are totally consumed with their children. I always find myself talking about my kids to other people. Why is that? Because your kids are literally on your mind ALL the time. And why shouldn't they be? They are people you are responsible for. That's a big undertaking. Sometimes I wonder what I ever talked about before I had kids, until I go out with my "selfish time" friends.

In some ways I find them rejuvenating. Some of them have kids themselves, so they can identify with kid issues, but we have never met their kids and we only keep up with their kids through social media. It is nice to have friends like that. They remind you of who you were before you became a parent or caregiver. You'll see them less after your child is born, and they will understand, but don't lose them.

I know its hard for some of you to find caregivers while you are away. There are a lot programs that are popping up that will allow you a few hours to yourself, ask your care team if they know of any. You need to take a break for yourself. Don't be afraid to maintain an identity as a human being, separate from your child. Don't be afraid to maintain that same thing with your spouse.

It's no secret that Autism puts strain on a marriage or relationship. It drains you both physically, emotionally, and financially. It drives a wedge, don't be afraid to flirt. "Hey there handsome" will make him feel good. "Good morning beautiful" will make her smile, especially in sweatpants and ripped up old shirt. You have to build each other up and what does it really take, but a moment? Contact is so important to human beings. A hug, a simple hug, can lower your heart rate and release endorphins. A gentle touch can break a stress cycle. Hold hands. Something as simple as that can do so much when you're just walking together or arguing about something. It actually forces you to listen to the other person, because it physically reminds you that there is another person there with you.

Adult relations probably take the biggest hit during child rearing for typical parents, so imagine what it does to parents in your situation. I know you are already tired and I know you feel like literally falling over at the end of the day, but make time. Realistically what does it take? 15 more minutes of your time, if your lucky. (That's a joke, ya'll, laugh.) Don't let the love you had for each other before kids, be the only thing expected to make a relationship last. You have to maintain it, just as you need to maintain yourself.

Finding a balance is hard and nothing will ever be 100% balanced all the time. Most of the time life feels like a rat race, therapists, doctors, school, work, it can be overwhelming. I recently had to break that cycle. I was stressed, forgetting appointments, and found myself unwilling to go to the ones I did remember. I have stopped taking Aiden to some of his specialists. We have gotten the answers we need for now and its time to just de-clutter the schedule. Some of you don't have that luxury and I understand that. Try to pick two days in the week, minimum, where you do nothing, it can be a school day since you are not the one in class. You sit at home and watch movies or read books, one of those days, once a month, try to get together with a friend or two. You'll find it helps your peace of mind. Meet your spouse for lunch, if you can, during the week and enjoy a moment together. You'll find it does so much for your state of mind.

Good luck and we hope you have enjoyed this moment. Thank you for sharing it with us!

No clothes...Again?

Have any of you ever encountered this? Aiden is going to be 4 soon and he still strips down the the nude. I have heard other parents talking about their children with Autism doing this. Why is that?

Don't let this worry you to much. What I've found is there are a lot of people who do this, particularly when going to the restroom, and it is certainly a behavior not selective to Autism. A good amount of parents say their children out grew the behavior. I hope that offers you some comfort.

I have found that inside our home Aiden strips completely, its what he feels comfortable with. In public he stays completely dressed. Our daughter just turned 2 and hardly understands what nudity is or what the differences are between boys and girls. We have been trying to get Aiden to leave his clothes on in the house, but find being clothed all day seems to overwhelm him. Aiden is day time potty trained, but at night he still sleeps in a diaper, refusing to sleep in bed clothes.

A high functioning child, like my son, can understand the need to wear clothing in public. Sometimes with nothing more than a simple explanation. Understanding the perceptions of others and the appropriateness of social situations in regard to clothes maybe lost on them at first, but seeing you wear your clothes in public will help. Be contentious of how you explain this situation. Children can be impressionable and you really want to avoid making them feel uncomfortable with their bodies. Something like "Mommy wears clothes. Daddy wears clothes. Sister/brother wears clothes. Grandma and grandpa wear clothes. So you wear clothes too."  This rational "normalizes" the behavior.

So what do you do if your child is not high functioning? Continue to explain to the child what it is you expect, just as you would for any other child. There are some things you can do like turning the clothes around so the buttons, zippers, fasteners, etc are in the back instead of the easily excess able front. You can also try dressing in layers.

The explanation I found most acceptable was the sensory one. As you know certain textures of clothing may be found to be irritable to children with Sensory Processing Disorder or Autism. Things like tags and rough fabric may be one cause for stripping. Fabric softener is a good way to soften clothes if rough texture is difficult on your loved one. It was explained that some children need the pressure that loose fitting clothing cannot provide. So the loose fitting clothing may be seen as an annoyance.

This got me thinking, what if you dressed your loved one in clothing that provided more pressure? How in the world do you do that without tight fitting clothes? Swimming shirts like those that swimmers and surfers wear are made of spandex type of material and may provide the right amount of pressure. They are tight enough to fit under clothing and maybe acceptable to your loved one. Its worth a try if stripping is a constant issue for your family. Another solution comes in the form of weighted vests and shirts. They are sold online from multiple different companies and are fairly common in the Autism community. They range from $50.00-$100.00 each. The vests function much the same as weighted blankets and are being designed to be more fashionable.

Lots of products are being fashioned to help your child or loved one with their sensory needs. I stumbled on seamless socks today while looking at different types of vests. Therawear has some for sale on their website, but I cannot determine of the price is per pair or per set. I have also found that Striderite makes some as well. Either way for some parents and caregivers things like this maybe priceless. 

Here is a blog from a sensory mom that gives great tips for dressing a sensory sensitive loved one. I hope this helps you: 11 More Tips for Dressing Your Sensory-Sensitive Child

Here is a link to other sensory coping items for use and wear: Must Have School Gear for Kids with Sensory Issues

For more tips and help with your specific struggles contact speak with your care team. Behavior modification provided by your ABA will be specifically helpful during this struggle. An Occupational Therapist can help with any sensory issues you maybe experiencing.

As always we are here for you at Aiden's Heroes. Follow our Facebook page and Pinterest boards for the latest and greatest from us. Thank you for including us on your Autism journey. 

Tis the Season

"Tis the season to be jolly" they say. Beautiful lights, the smell of pine and cinnamon, happy screeching children, the wrapping paper, bows, carols, family, friends, meltdowns, jingling bells...wait, meltdowns? That's right, meltdowns. Your loved one with Autism will be subjected to more sensory input now than most times of the year. Holidays are always a challenge, even for high functioning kids like Aiden.

Aiden has been particularly sensory sensitive for about a week and a half now. We've had a cold front move in, so all his clothes are long sleeves and pants. People in the neighborhood are putting up Christmas lights. Almost every store you walk into is blasting Holiday music and the smell of pine and cinnamon are almost obnoxious to me, so to him I can only imagine. Out of town family is on their way if they aren't here already. Everything is just so busy and don't think for one moment the stress of the season isn't impacting them too.

How can you help them? Its more simple than you think. First, your out of town family. They, especially to little ones, are practically strangers. Some people believe that being family there is an implied consent to touch, hug, or kiss, your little ones. For typical kids this is acceptable and they can withstand it for brief moments, not so for kids with Autism. Its not that they're being mean, but if touch is few and far between for people in their every day lives, then it is certainly unacceptable for people they hardly know to touch them. So what do you do? Send your out of town family a list. Tell them what the likes and dislikes are for your child and allow them to exercise the "likes" within reason. Most people don't know what to do around a child with Autism, so they over compensate, almost to a sickening level. Your loved one's mannerisms may be unsettling if the behavior isn't understood. If you notice your loved one connecting with a particular family member, take them aside and talk to them. "I see that (insert name here) has really taken to you. That bond is really something special, its hard for (insert name) to connect with people, but you've made it easy for him/her to connect with you. Thank you for being so great with him/her."

How do you handle stores? First know what your child is sensory sensitive to. Aiden isn't particularly sensitive to smell, he will point it out unmercifully, but he can push past it for a time. If you notice a store with strong smells, try to go alone. I know that's tough. Can you order your items online? Sometimes shipping fees are worth it to avoid sensory meltdowns. If not and you must take them call the store the day before. Explain your situation and ask if they will pull the items for you, so you can just go right to check out. I'd be willing to bet 99% of stores will accommodate your request and if your store falls into that 1% that won't, then their competitor will.

Sound is Aiden's Achilles heel, as most of you know by now. We solve that problem with ear protection. Its relatively inexpensive and you can pick up a pair at most surplus, big box, or hunting supply stores. Just keep a pair in the car or in your purse and a pair in the house. That way they can enjoy the same things you are, not be tortured by them.

The holidays can be fun for everyone with some help from you. You're an important part to your child's successful holiday season.

We here at Aiden's Heroes want to wish you and your family a very safe and Happy Holiday and New Year. We hope this next year is better than this one and that you continue to join us on your Autism journey.

You can always connect with us on Facebook and Pinterest! 

To Tell or Not to Tell

Its one of the hardest decisions. Do I tell my child they have Autism? If their low functioning will they even understand? If they're high functioning and doing well, does it matter? Will telling them make them conform to a label?

As the parent of a child with Autism I understand these frustrations and one day I may be faced with the situation. I think this decision is personal to each person. I know, being the type of person I am, I would rather know than not. To me its like the doctor withholding that you have cancer. Now we all know that Autism is nothing like cancer. Cancer can eventually kill a person, but Autism alone does not.

First I think its important to know your child is aware there is something "wrong" with them from a very young age. My son asks me why he has to see so many doctors and he is almost 4. My husband and I don't speak about Aiden's Autism on a daily basis by any means, we just know its part of who he is and we just accept it as part of our normal daily life. If I have to take Aiden to a specialist I say "Aiden has a doctor appointment", but I usually don't have to elaborate. We don't refer to our therapy team as their specialization, like our ABA or OT, we refer to them by name. Still he knows. How? His sister. Our daughter, from what we can tell, is neurotypical. She goes to the appointments with us, but is not there to see the doctor.

For right now, when Aiden asks me what is wrong with him, I simply respond: "Nothing, you are just so awesome and everyone wants to know why." That's good enough for now. I know, when he goes to school, one day he is going to ask me "Mom, do you ever feel different for other people" or "Mom, I don't think I fit in" or "Mom, why is it so hard for me to make friends?". That is when I'll know that it is time to start talking about it.

How you tell your child is going to be important. How you tell them can set the tone for how they react to their own diagnosis. Have you ever received a life changing diagnosis? The day I was told I have psoriatic arthritis and would need medication for the rest of my life was a life changing day for me. The day we received Aiden's diagnosis was a life changing day for me. Those are days you don't ever forget. That will be this day for your child. You need to know your child's temperament, personality, and character. Talk to your child's psychologist or trusted member of your care team around your child's 5 or 6th birthday. High functioning children become self aware of their differences around the age of 6 or 7.

So what about the children who are lower functioning? Remember, low functioning does not necessarily mean unintelligent or low IQ. I've discussed this in prior posts. Its fair to assume they know there is something different about them at or around the same time as their higher functioning or neurotypical peers. If you chose to tell them I would do so around this same age.

How do you introduce it? Slowly. My son is involved with the Autism Society of Greater Orlando, so I can only assume, at some point, he will put two and two together, if you know what I mean. He will draw the connection on his own. I envision the conversation starting with one of the questions I mention above. Of course I feel different than my peers. I've always felt that way, even from a young age. So I would start out by saying "I understand how you feel, but sometimes there are reasons for our behavior that other people can't understand without help." Like what? See I have this question easy. I'm a cop for a living, most of you know that from my prior posts. We act differently than other "normal" people because of what our job expose us to and how we are trained. I mean do you really care if your back is to a door at a restaurant? Probably not a deal breaker. For us, big issue. Those kinds of things. So I'd probably point out some of the weird things I do in public because of my law enforcement background. Then it would probably transition to "I know I am different because I was trained to be. You may feel different, but that is because you were born with a different way of thinking than other people. The way you think is known to others as Autism." That begins the questions.

You know the level you need to speak to your child on. Their "maturity" level as its called. Try to explain it in a way that is easily repeatable to their friends, if they are verbal, but make it clear they don't have to tell anyone if they don't want to. Welcome their questions with an open heart and open mind. If you don't know the answer don't make something up. Ask them what they think and if they don't know, then take it upon yourself to find out for them. Tell them you'll look it up or ask. Don't be afraid to show your humanity to your child when you are reminding them how human they are. You are not superior, you are experienced, there is a difference in the delivery and that is true for all situations, not just parenting.

Older children may have an idea of what Autism is. They may already have associated it with being something negative. You will have an interesting set of challenges as a parent in this situation. I still believe they should be told, but don't be surprised if they don't want to talk about it right away. Respect that space. Tell them you want to talk about it and answer their questions. Enforce that this is not who they are, its just part of who they are. Remind them no one is perfect, and this is a hurdle that they will overcome in their life. But above all remind them they are not alone in this. You are there for them. Let them come to you when they are ready. They may do some research on their own at first. Never demean them from doing that, instead applaud them for their maturity and for educating themselves. Engage them in the topic they present, be honest and sincere, but not judgmental. Unless you have Autism, you are limited in knowing the full extent of Autism. I can research Autism, write this blog, live as a mother to a child with Autism, cry with him, hurt with him, and fight with him, but I can not be him. I cannot live his life. As much as I may wish to jump into his head for one day, I can't.

Remember to think about how you're going to deliver this information to them. How you tell your child about their diagnosis will set the tone for how they feel about themselves. The diagnosis is not a definition of who they are. When people ask your child to describe themselves, what would you want them to say? Autistic is not what I want my son to say first, if at all. Autism is just one part of who he is. For other parents, especially with those who have low to moderate functioning loved ones, they may want their child to introduce themselves and immediately volunteer the fact that they have Autism. This is a safety concern I understand and advocate for based on the individual.

This is just my opinion on this topic. Some others may feel differently than I and that's ok. As always, we here at Aiden's Heroes are here for you.